PWD over-estimating their abilities - any strategies for coping?

SiberianIris · November 2023

My 94 yo mother was diagnosed with dementia last July. She is in stage 4. She lives in a CCRC. She's been there 6 years in a cottage living independently. Now we have a succession of aides coming in for various tasks, like medication management and general supervision. She complained about that a lot at first, but seems to have adjusted. She's still good on her ADLs thankfully.

The doctor told her she could not drive until she took a driving assessment. She failed the assessment, and we removed the car. The aides are available to provide transportation for her whenever she needs to go somewhere, whether it's out in town or within the CCRC property.

I live 90 minutes away and visit once a week. I accompany her to all doctor appointments. My 2 brothers live in town. One handles her finances and typically visits once a week. The other is more sporadic, but he will happily do things when asked.

She complains incessantly about not being able to drive. She also complains about the landscaping around her cottage, and says the landscaping crew ignores her. (They don't, but she doesn't understand that certain landscaping activities, such as trimming shrubs are done at certain times of the year. This has been explained many times, but like everything else involving short term memory, she forgets.)

These complaints would be solved if she moved from her independent cottage into the main building, but she doesn't want to hear about it.

I know I could take on the task of the landscape complaints, but I DON'T want to, because I know it will be another rabbit hole with no return. I am already busy enough managing her doctors and the succession of aides, so I play dumb about the landscaping woes, commiserate with her, and hint about how much she would enjoy the carefree life of the apartment. I also suggest she ask my brothers (specifically sporadic brother) to look into it, but she won't.

Any other suggestions? I don't want to be seen as the one who can fix everything. Is that mean of me?

She's now gotten the idea that she could drive a golf cart, because there are many others who drive them within the compound (who don't have dementia). Any suggestions for how to handle this? She thinks that because she drove a golf cart 20 years ago, that she could do it again.

Again, I play dumb and say that I don't know anything about golf carts. I tell her to ask my brothers, since they play golf. They know she failed the driving assessment, so I don't think this will go anywhere, but I get so tired of hearing about it.

I know that as the dementia progresses, there will be other issues, and these things will be forgotten about, but I would greatly appreciate any strategies for coping in the meantime. I know she has anosognosia, so that's why she over-estimates her abilities.

Thanks!

jfkoc · November 2023

It sounds like you are doing a bang-up job.

Mean? Absolutely not. Listening and agreeing are great tools!

Emily 123 · November 2023

I agree with jfkoc, It sounds like you're doing well.

Unfortunately, the trigger for the convos will keep cropping up every time she spies those shrubs, or neighbors in golf cart, etc. There's not much you can do about that as long as she lives where she does. She thinks she's telling you about these things for the first time, but you're hearing about them so often you're starting to feel obligated to act. Don't. In reality, putting her off is working, though it's exhausting. You can always switch things up by telling her you're going to talk to the landscapers rather than going through explanations. As you've already realized, reasoning and explaining will only have an effect for as long as your PWD can recall the information, which isn't long at all.

I'd also consider taking a break here and there from your weekly visit if you need it. Maybe ask brother # 2 to pinch hit if you feel like mom really needs a weekly check in. Also, many CCRC's have medical staff they use, who can do in-home visits. If hers does, you may want to consider switching her care over to them if you heven't already.

In terms of a move, well, it sounds like it's coming. I'd caution about allowing mom to be the one making the decision about when it's time. She's past that point.

Quilting brings calm · November 2023

Does one of you have power of attorney?

I would suggest a fiblet - with the help of the director. Maybe your mom’s cottage could suddenly need some remodeling or repairs that would that would require her to temporarily relocate to the main building.

I think you are doing a great job.

harshedbuzz · November 2023

@SiberianIris

I am sorry. While it's true that there are some difficult issues in the later stages, stage 4 is no picnic either. I found stage 4/5 much harder than the later stages with my headstrong dad. He still seemed "more himself" and had enough bandwidth to wreck havoc. Plus, I wasn't yet comfortable taking over assertively. Those were dark days.

I found once I was more assertive in making decisions, dad seemed to stand down and relax a bit ironically. And managing got easier. But I suspect you're not quite there yet.

If you have become mom's go-to problem-solver person, it's unlikely you're going to wean her away from that. If you're the only daughter, it's even less likely you can retrain her to rely on someone other than you because daughter as caregiver is baked-in for some older people.

If you haven't read this, see if it helps. I found it helped me understand certain dementia-driven behaviors and be less reactive to them. For something like the landscape woes, I would validate her frustration and create some fiblet around "scheduled for the spring".

Understanding the Dementia Experience (smashwords.com)

This behavior might be exacerbated by her having a lot of time alone to ruminate. If she were in MC, they engage her and keep her occupied with activities.

HB

SiberianIris · November 2023

@jfkoc and @Emily 123: Thank you - that means a lot!

@Quilting brings calm: Yes, my brother who handles Mom's financials has POA. All 3 of us have Health Care POA. It's written that we can each act independently, but that we should consult with each other. Thankfully we're all in agreement so far in this regard.

@harshedbuzz: Thank you for the recommendation. That was a worthwhile read.

The hits keep coming...Mom now tells me she wants "one of those phones with a screen" (a smart phone) like her friends have (who are likely at least 10 years younger). She's never been interested in one before. She has an old fashioned flip phone, but lately she's been struggling with that and thinks the smart phone would be easier (plus all the "cool people" use these).

Five years ago, her CCRC gave everyone in independent living mini iPads as an effort to cut down on paper and appeal to the younger residents. They offered classes and tutorials. Mom took these, and we (my brothers and I) spent many hours giving our own tutorials. Trouble is, she wouldn't practice with it on her own. It was apparent even then that she was struggling with learning new skills. I didn't think too much about it at the time since she'd never used or had any interest in computers. She hadn't mentioned the iPad in the past few years (and I haven't asked).

I looked at the "smart phones for seniors", and honestly I think these would be too confusing and frustrating for her because the screen has too many options, like email, internet, etc. The thing she struggled with the most even 5 years ago was just the touch screen itself.

Hopefully she won't bring this up again, but any suggestions if she does? I guess I could always keep saying "I'll look into it." This is so sad and frustrating (for us both)!😥

Emily 123 · November 2023

I think you're right. If she's not using the ipad then a smartphone will probably be a wash. You could dust off the ipad and see if she can use it--I deleted all the 'extra' icons from the desktop on my mom's, plus hid the settings icon in the library, because she keeps trying to set up security passwords otherwise (The 'settings' icon can't be removed, just hidden). The ipads are nice for games- -my mom plays solitaire on hers obsessively. If she doesn't turn the sound down I can also Facetime her. But I will say that Mom used her ipad for about 10 years prior to her diagnosis, and how to use it seems to have stayed with her.

Your mom seems driven visually and is still engaged and social enough that it's going to be hard to remove her triggers. On the other hand, perhaps she's reaching the 'out of sight, out of mind' stage? That's when fiblets and diversions start to help. This may just be another 'ask' by her that you defer on, even though it doesn't feel good.

catminor · November 2023

https://alzconnected.org/discussion/comment/189159#Comment_189159

Our mothers sound so similar. Mine is 89, has been in Independent Living at a CCRC for 5 yrs, and has MCD. But, I am now moving her to a CCC (monthly instead of buy-in) close to me in CA.

I was so relieved when my Mom dropped and broke her iPhone and I switched her to a flip phone, which she also barely knows how to use. She emails or calls me at least once a week about her computer. There are so many reasons I'm moving her to a CCC 20 minutes from me, and these little reasons add up, in addition to the main reasons of having true AL and MC services and units available in an all-in-one community. The CCRC just didn't have what she will soon need, with only Home Health Care services (way too expensive at that CCRC) and only 11 beds in the nursing home facility for MC, which are always full.

It is sad and frustrating to walk this path with her. For small things like phone, computer, etc, I just tell her I'll fix it when I come over, and that works (these things are never broken, but it makes her happy for me to tell her this). For things related to her increasing memory loss, I generally just listen, sometimes repeat my same answers as before, which could be from the same day, 1 day, or several days, and sometimes do the fiblet. The other day, she insisted we stop to get $300 from the ATM, but I'd seen on her bank account that she just cashed a check at her bank for $200, so I asked "Momma, how come you need so much cash?". She said "I just want it". So, I got the cash from the ATM, and when she fell asleep watching TV, I took the $300 cash and put it in my wallet with the ATM receipt. There was a time that doing that would feel bad for me, but not anymore. I knew she wouldn't remember even going the ATM, and I was right. If she does remember, I'd just say I'm holding it for her for our trip to CA.

Hugs to you. I wish I could say it gets easier, but it doesn't. It really sounds like finding "reasons" to move your Mom into the main building at the CCRC is a smart move, before things get worse.

Cat

PWD over-estimating their abilities - any strategies for coping?

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